Show me what you’re worth

Value and worth are based on  all sorts of things. There’s material value, namely, the kind of house you own, the kind of car you drive, the balance on your bank account. There’s emotional value, which I think means your support network, the people who are still there when you’re being whingy and clingy and annoying. In today’s fast-paced world, value is obviously placed on the person who can perform the most tasks within a set time frame. Words to describe this person might include dynamic, motivated, driven, dedicated.

From the cradle to the grave, it seems as if life can feel like a great big competition. Babies’ weight and height are constantly compared. From the moment our children start school, there are art competitions, handwriting competitions, sports days. Although our job as parents is to teach our kids that they can only do their best, somewhere along the these kids learn that it’s important to be the best, it’s important to win. Just today, my three and a half year old daughter came home, devastated because she didn’t win a game of musical chairs at playschool. She’s learning that sometimes she loses, that she can’t win all of the time. This is something that I as a parent must teach her, and yet, I can empathise with her. I know what it’s like to lose in a world where winning seems so important.

As the loyal followers of my blog will know (hi dad!) I’m on a six month career break at the moment, and although I am enjoying it, it’s hard as well. We are born into a society where we are taught from an early age that having the best job, the highest paying job is something we should aspire to. As a person with a disability, our narratives are quite different. First we are born, and most of the time our parents are told not to expect too much. If we live past  a week or two, that in itself would be a remarkable achievement. Our parents don’t love us objectively, however; to them, we are everything. They push us through the system, ignoring the derogatory comments, challenging the lack of educational supports, tolerating being called delusional and stubborn. They don’t accept that their children are not worthy of equal treatment, and in turn, as we grow older, we must continually challenge the system too, proving ourselves to be capable, autonomous individuals.

Historically, man’s worth has always been connected with their physical and intellectual strength. During the Stone Age, people with physical impairments were often left to die. During the Christian era, people with disabilities were viewed as objects of pity, as charity cases. Then of course Charles Darwin came up with his riveting ‘survival of the fittest’ theory, a notion that Hitler took very literally as he carried out ‘assessments’ on people with disabilities, where he decided whether people could live or die based on their physical and mental capabilities. Granted, Hitler was a lunatic – few would dispute that – but in spite of how controversial his plan of creating the perfect human race was, sometimes it feels that we haven’t moved far from the idea of equating somebody’s worth with what someone can physically do.

When I was in college studying feminism, we used to discuss something called ‘the virgin/whore dichotomy’. Basically, it was this notion that women were either one or the other, and that in failing to live up to the  ideal of  the perfect virginal woman, they were imperfect, damaged, inferior. I often feel that when a story is told in the media about disability, the subject is either portrayed as being super-inspirational or vulnerable. You know the stories I’m on about (I’ve  written some and been the subject of others), they normally go along the lines of ‘Despite being in a wheelchair and taking ten tablets a day, Joe has managed to learn Chinese and Computer programming,’ or ‘Because of the cutbacks to her Personal Assistant Service, Emma may not be  able to enjoy living independently in her own home for too much longer.’  Stories like the latter are often the only way to highlight how the recession has affected people with disabilities. We sacrifice our  dignity in order to get our point across. And I believe this should not be necessary.

People with disabilities have much to offer society, and they are worth far more than a paltry €30 on a Jobbridge Scheme. All the new plans to create jobs for people with disabilities are laughable because many of us don’t want to be segregated from the main workforce. All we want is equality, which is not the ability to do as much as our peers, but to be recognised as useful, productive members of society.  Hopefully the UN Convention on Human Rights for People with Disabilities will be ratified next year, even as a tokenistic gesture that everyone should have equal rights.

We are worth so much to society, and now it’s time for us to be more vocal and construct our own narratives. There is no  need to feel small and insignificant. Shout loud. Make sure your voice is heard. Don’t let people  make you think that your issues don’t matter because they’re only perceived to affect a small number of people.

We deserve equality, in spite of our limitations. We are worth  nothing less.

A Crip With A Chip

My name is Sarah Fitzgerald, and I have an awful confession. I think I have turned into an angry person with a disability. A ‘crip with a chip’, I believe we are referred to.

I hate ‘angry crips’, or at least I thought I did, until recently. I’ve come across many people in my life who I would’ve dubbed an angry crip at one stage. They are portrayed as believing that the world is against them. They seem to moan about things all the time, but yet they don’t do anything about anything, because they think it is pointless. I used to think it was laziness, selfishness, that they wanted everything handed to them. Yes, I am ashamed to say that I used to view the angry crip as some sort of moaning Michael.

As life changes day by day, so too does my perception of the angry crip, because I’m starting to think that maybe an angry crip has every right to be angry. Maybe it’s old age, maybe it’s cynicism. I personally think it’s I-don’t-think-I-can-take-more-of-this-crap … ism.

In my previous blog, I wrote about the expectations we have of ourselves and how we sometimes go to extremes to meet these. Some of these expectations come from within, but there’s no denying that society and consumerism create them too. When my daughter Alison sings ‘Let it Go’ and particularly ‘don’t let them in/don’t let them see/Be the good girl you always have to be,’ I cringe inside. I know Elsa sings them with irony, as a reminder that society expects women to act a certain way. I just don’t want my daughter to feel pressured to become anyone less than who she is inside.

I must confess that over the years I too allowed myself to aspire to perfection. A grade-A student in school, who from the outside struggled through adversity and completed the Leaving Cert. Teachers would look at me in awe; I would look at them like they were demented. ‘But you still get on with things, despite everything, aren’t you great?’ they would gush at me. My parents never said this to me and I love them for it. I went to college where, let me assure you, I never heard how great I was once. I wasn’t treated differently at all, and it was there that I gained a sense of what it was to be equal.

And then I was flung back into the real world. A world where people stare at you while you’re having your lunch, having full-blown conversations about you (‘the one from the telly’), your walking (‘she’s very shaky, God love her’) and your disability. This used to not bother me at all, but now it’s difficult to resist the urge not to go over and say ‘I’m sorry, can I help you? introduce you to the art of whispering perhaps? Because I can hear what you’re saying from the other side of the restaurant.’ But I never break my resolve, and you know why? Because I don’t want to be known as the ‘crip with a chip.’

My resolve has been tested so much over the last few months. I watch as people can’t access education and employment because there are too many obstacles. I was in a queue in the bank recently, in my wheelchair, and a woman said to the person who was ahead of her ‘I need to hurry up cause I have my mother in the car in the wheelchair space so I wouldn’t need a ticket.’ (When I told her this was wrong, she ignored me.) And you know, the usual that all of us put up with at some stage or another: the taxi man asking my friend who was putting me into the taxi where was I going (I didn’t know, apparently); a shop assistant taking my wallet off me, looking for change because I was taking too long to find it; a woman asking me where my mother was as I dropped my handbag and started scooping up all my change (‘Who is with you?’); people talking over my head (‘she wants the chicken roll’). And you are expected to keep schtum and smile. Well, sorry, no. I’ve had enough.

Two things tipped me over the edge today into writing this ranty blog. The first was seeing an interview of two veteran disability activists from the US, Ed Roberts and Judy Heumann (who I met in 2011). The interview took place in 1984 and Roberts and Heumann were talking about the need for people with disabilities to have more control over their own lives. ‘There is a lot more to life than being physically perfect,’ Roberts said. Judy Heumann said, ‘Disabled people have to fight harder in order to be able to make it in the system… if they want to live the life that they want.’ In their opinion, people with disabilities need to be seen in positions of power in order to be taken seriously, and they need to work together in order to achieve this. Judy adds: ’I question whether disabled people have achieved democracy and solidarity’. Although this interview is thirty years old, it is unfortunately still relevant today.

Then I opened the local rag to reveal the headline, ’24 hours’ notice required if assistance needed to get on train’. For a moment I thought I’d entered some sort of time warp, but no, this was an article written in 2015. I was outraged and posted this on Facebook immediately, to which some of the responses included, ‘yeah, this has always been standard practice in our local station.’ Eh, really?! How can anyone think this is okay? Have we become so complacent as a society that we not only witness discrimination every day, but think that it’s to be expected? That it’s now just a part of our psyche, part and parcel of having a disability?

No, sorry now, but from where I’m sitting I’d rather be perceived as the angry cripple and be vocal about these very real issues than give into the status quo and say nothing. Because if we don’t start channelling this anger into making real changes in our society, then we might as well watch all of our human rights slowly disappear. And if we don’t start making these changes, us ‘crips with chips’ will always have something to be angry about.

Schooldays

A couple of weeks ago, John Paul and I finally got around to dropping in the enrolment forms for Alison for primary school, which she is due to start next year. We’ve spoken to lots of parents about their opinions of what school might be best, and based on this we have nearly decided which school would be suitable. I’m not telling, but needless to say, standards and class sizes are factors in this important decision. As long as Alison is happy, I don’t really mind. Her happiness is everything to me.

Enrolling Alison in primary school has brought back memories that I thought I’d long forgotten. I started school in September 1989 at the age of five. I obviously don’t remember this myself, but I know that my mother had to beg the principal to let me into the school. There was a ‘special class’ on site in prefabs, which would’ve been suitable for accessibility reasons but stood separate from the main school building. My mother wanted me to be integrated as much as possible and finally, after much coercion, the principal agreed that I could join Junior Infants, specifically Mrs. Dowling’s class.

Mrs Dowling was so kindhearted and soft that I couldn’t believe my luck. On my first day of school I sat beside a girl called Emma, who remained a close friend all through primary and secondary school. I was a novelty, but school was the first time that I felt any different from my peers. I had to be wheeled about in a buggy for my first year in primary school. Children would be told, both by teachers and parents that ‘Sarah is very delicate and walks differently from other people.’ Delicate, my hole. I was clumsy, but sturdy. Yes, I was easily knocked over, but I could pick myself up just as easily. After a while, it was more like ‘Get up off the floor Sarah, you look like a tool.’

Indeed, I don’t remember primary school as being one of the most dignified times of my life. I remember in Junior Infants there was a box of old trousers and underpants under the teacher’s desk, in case somebody had an accident. If ever there was an incentive not to soil yourself that was it. God only knew who had been wearing those pants beforehand.

As if being wobbly and misshapen wasn’t quite enough to separate me from the pack, I was awarded an electric typewriter, possibly a state-of-the-art machine at the time, that sounded like it was coughing every time a letter was pressed, and a machine gun every time the eraser was activated. Because my speech was seemingly unintelligible, the typewriter doubled up as a communication device. I think I ended up costing a fortune in ink! There were no laptops at the time, but there were Acorn Computers which needed lots of complicated codes to access. These were only available in the Resource room at first, but soon there was a computer per classroom.

It was in primary school that I started to develop a lazy work ethic, and I think being sternly corrected for my antics have left me with a phobia of being lazy or not reaching my potential. In third class, I told the substitute teacher that my parents had decided that I shouldn’t have to do homework because they were afraid that it would tire me out. I got away with playing computer games for a whole month because I acted as if I was so stupid in class that the sub evidently thought that there was no point in teaching me. Needless to say, that when my parents were confronted about my antics, they were so mortified that they couldn’t summon up a punishment severe enough. Actually, this is untrue; until the day she died, my mother would casually bring up this particular incident in order to frighten me into achieving my potential.

I also went through a delightful phase (that only ended towards the end of first year of secondary school) of wanting to write down everything by hand. I wanted to be like everyone else, and if my disability wasn’t enough to stop me getting homework, then at least I should be able to write with a lovely fountain pen just like my classmates. Problem was, of course, that teachers are not trained to read Ancient Greek. By the end of first year, I succumbed to using a laptop and computer for classwork, but only because it was a modern Windows 95 and not the ‘abomination’ with the illuminous green screen that had been donated by Dad’s work colleagues. I would have nightmares about pressing the wrong button and breaking it. Even now, my parents don’t believe me.

I wasn’t really allowed partake in mainstream PE, but I was given a gym mat in the corner where I could do my physio while the others played games. Hmmm, fun. Not. However, I did enjoy a few sessions of Irish dancing in my older years, and I was allowed on the trampoline a couple of times. Needless to say, however, I was not chosen for the basketball teams. As I got older, I was allowed to bring my tricycle into sports day at school and I would spend all day cycling around the town park, cheering on my friends.

Indeed, primary school wasn’t all ‘doom and gloom’ and I remember crying for days when I left sixth class. It was in primary school that I decided, with some conviction, that I wanted to be a writer. Primary school taught me that with equality comes responsibility, and that if I wanted to be respected and treated with dignity and credibility, I would have to prove that I was worthy of this. I also learned that being outside the ‘popular’ circle was not a bad thing, and I never felt pressured to be anyone but the needy social misfit that I was (am!)

And now, as my precious daughter grows older and nears her own primary school adventure, I hope that she makes her own memories that she can look back on with fondness. I hope that she won’t get teased in the yard for having ‘wobbly’ parents. Most of all, I hope she has fun. Though if she could find fun in activities that didn’t involve manipulating her teachers like her mother did, I’d be grateful.

20 Experiences that you are likely to relate to if you have a disability in Ireland

Hi there. Yes, it’s yet another disability post. Sorry about that, but, y’know, after living with a disability since birth and working in the disability sector for ten years, you become accustomed to the challenges facing people with disabilities every day in their quest for equality, respect, or sometimes just to be left the f*** alone to live their lives. If you are a ‘normie’, that is a person ‘without disability’, you might be a bit offended, and for this I apologise; you can’t please everyone and all that.

Here we go:

1. You are going about your normal business in your local Tesco and are reaching for an item when a stranger who has been watching you for half an hour (following you around the shop actually) pops out of nowhere to grab said item, startling you and causing you to fall on the floor. You look like a tit because you’re a grown adult who is now lying on the floor. Now they are pulling you up by your arms which is a waste of time because  your feet are not ready and bam! down you go again. Why do they let you out on your own?

2. When people can’t understand you because of your speech impairment and they start talking slower to you: ‘I – can’t – understand – you’. Well, I can still understand you, you tool, it’s me who needs to speak slower. Incidentally, I’ve been reliably informed that if someone has a hearing impairment/is deaf/Deaf, speaking slower makes things worse as the person may rely on lip-reading. So there.

3. When you try to order a wheelchair accessible taxi (the phone numbers for these are known by a sacred few) and are told that the taxi doesn’t operate past 11.30pm (come on, even Cinderella got till midnight) or that you didn’t book it four months ago,so no dice Ha, thought you’d be spontaneous, didn’t you? You thought wrong.

4. Total strangers think it’s okay to come up and bless you. Sometimes they grab your wrist, holding back tears. ‘You should go to Lourdes’, they say. I’ve been offered money to go to Lourdes and be cured. Guess what, people? I’ve been to Lourdes, and I’m still disabled. I want my money back.

5. You decide to stop being a heathen and go to Mass. I recently went to a dinner held by a disability organisation and there was a lovely Mass beforehand. However, there is something slightly disconcerting about having a Gospel where Jesus healed all the lepers and cripples when 75% of your congregation use wheelchairs or walking aids. Not that I’m equating disability with leprosy, but still.

6. You are an individual! You are You! So why is it when you see a person with a disability on the street are you likely to think, ‘I wonder do I know them’, and if you don’t, ‘I wonder why I don’t know them’.

7.  You ring Eircom/the bank/AES/Electric Ireland in relation to your most recent bill and they have those stupid voice activated menus. And then, after being on hold for 45 minutes, they disconnect you because they can’t understand you.

8. On a related note, people hanging up on you because they think you’re drunk, which saps your self-esteem so much that all you can then think about is getting very drunk.

9. Eejits trying to push your electric chair because they’re too silly to simply say ‘excuse me’. Incidentally, there is a way to manually push electric wheelchairs which involves unlocking the mechanics underneath it, which is handy if it breaks down. However, I can easily move the chair myself if I want – it’s amazing! Also, I’m pretty sure that if I lifted somebody out of the way in a queue, I’d get punched in the face.

10. If you are foolish enough to get angry or annoyed at anyone in 7, 8 or 9 above, you earn the dreaded ‘angry crip’ badge. Nobody like the angry  crip, or to use the more alliterative term ‘crip with a chip’. You think the whole world is out to get you. It’s not, it’s all in your vivid imagination. Get a grip.

11. Because of the strong support network provided by IWA and CIL (thanks guys!), it’s common for people with disabilities to befriend one another through committees, social events, etc. Beware that if you decide to meet up with your mates outside these circles, and you all have disabilities, you are guaranteed to have at least one nosy Nelly come up to you and ask ‘are you all out for the evening? Isn’t it great to get out?’ Er, out from where? Do people still think that people with disabilities should be institutionalised? Scary thought.

12. If you go for a drink/coffee/meal with your husband/friend/Personal Assistant/Family member, they may well be asked what you want to order. This is called ‘does he take sugar’ syndrome (no, honestly). Basically it’s an assumption whereby  you as a person with a disability cannot make basic decisions for yourself because you are a complete tool. No point in asking you so. You may hope for the best.

13. A noun refers to a person, place or thing. Just to clarify: a wheelchair is not a buggy, wheelbarrow or chariot; a person who uses a wheelchair is a separate entity from the wheelchair (a liberation tool), a person who uses these aids does so to get around, not just to get a pass into using the accessible toilet.

14. Which brings me to this point: sticking a wheelchair symbol on a toilet cubicle door does not make it an accessible toilet. If you cannot get the door closed when you bring your wheelchair inside the cubicle, then the toilet is not accessible. I’m sure the world does not want to watch people with disabilities pee, but hey, if it does, who am I to judge?

15. If you’re a bit of a gambler, why not head off for the day on the train? Sure, don’t they even have accessible toilets now? (not bad toilets either). Don’t forget to remind the train station staff ten times to ring ahead to your selected destination so that they can have the ramp ready for you. But don’t be surprised if, when you arrive, there is no sodding ramp and the station weren’t informed you were coming. Sure it’s no big deal travelling to the next station, begging them to get the ramp and let you off, and travelling back. Sure what else would you be doing?

16. If you’re a real daredevil altogether, get the DART. My husband nearly had his arm amputated by the doors of the DART when they closed on his hand and  then the DART proceeded to take off. He was on the platform and he could feel himself being dragged alongside the train. It took six strong men to pry the door open and release his hand. The reason why my husband had his hand in the door in the first place is because my friend and I were waiting for the ramp which didn’t materialise. What did we do? See number 15 above.

17. If you have a disability, you have to be nice, polite and well-behaved all the time. Telling someone to mind their own business does not go down well. Don’t let them know that we are real people, sssh! Some people with disabilities, just like you normies, are generous, kind and friendly. But others are just downright assholes. And guess what? Just because you know one, doesn’t mean you know us all.
18. People think it’s okay to ask you about your sex life. This is just wrong on so many levels. Why do people want to know this information? I blame programmes like ‘Little People, Big World,’ a show where a family explores their everyday lives in the public domain. I don’t want to hear about your sex life, don’t ask me about mine!
19. Having children is a gift, and there is a mistaken assumption that our children will be burdened by us and will have to care for us because we have disabilities. This will never happen as long as  the government realises that parents can be empowered through the provision of services and equipment that put us in the driving seat. Simples!
20. Finally, having a disability is not the end of the world, but people tend to think that it is. They find it incredible that we can be devoid of resentment or anger at the world for the hand we’ve been dealt. I know I have days where I wish I had more energy and less pain, but I’m sure even normies have these days. So stand (or sit) proud and tall. You are brilliant. You are fantastic. You are the subject of much speculation and curiosity. Enjoy it. Jordan had to get her assets enlarged for that sort of attention.
And all you do is go about your everyday life!
Well done, you xxx

Talkin’ bout a revolution (again)

Election time has arrived again, and the atmosphere is almost electric. Posters on every pole, letterboxes crammed with manifestos, Facebook (and Twitter, I assume) home to pre-election scandal, the most recent being a van used for a candidate’s campaign parked illegally in an accessible parking space. This move caused outrage across social media sites this morning. Being a poet at heart, I saw this a metaphor for how far people with disabilities have yet to go in their quest for equality in Irish society.

Over the last five years, my profession has allowed me to explore and learn about the Independent Living Movement. I’ve studied the history of people with disabilities prior to the Movement and was physically sick after reading about the T4 Project which took place under Hitler’s reign during the Second World War. For those of you who are unfamiliar with this concept, I am talking about a scheme that Hitler himself devised where people with ‘incurable’ disabilities were institutionalised and later gassed or injected with a lethal substance (a ‘mercy death’).

The Independent Living Movement came almost twenty years later, coinciding with other human rights movements. I can imagine the excitement in the air as Ed Roberts, a young man and polio survivor, enlisted the assistance of an ‘attendant’ which enabled him to live away from home and attend university. He and a group of fellow ‘disabled students’ formed a group called the ‘Rolling Quads’ and they established the first Center for Independent Living in 1972. At this stage, the concept of somebody with a disability having control over the fundamental aspects of their everyday lives, such as deciding what time to get up in the morning, where to go, whether to work or pursue leisure activities was a foreign one.

And despite the Independent Living Movement arriving in Ireland in 1992, the physical and emotional freedom of people with disabilities is still in question.

We have to ask ourselves why, twenty-two years since the Personal Assistant Service was made available in Ireland, people in this country are forced to live in residential institutions and hospitals; why people who need the assistance to live independently live in fear of vital services being taking away; and how we got to a point where we say nothing in response to all the cutbacks in recent years in case we ‘rock the boat’, even though many people remain on a sinking ship, waiting to be rescued by a Government who caused us to sink in the first place.

It seems that Government is only interested in helping people with disabilities when times are good. Despite all the studies that have been conducted on the viability of the Personal Assistant Service, people are still living in institutions and hospitals, where they exercise little choice over their everyday routine. Having a disability is an expensive way of life, and yet medical cards are being revoked, housing grants are being refused and household allowances are almost non-existent. These cuts inhibit people with disabilities from participating fully in Irish society and ironically from contributing to society rather than sponging off the State.

So until we stand united and say ‘enough is enough – we want equality and guaranteed access to the services that will enable us to achieve it’, we as people with disabilities will always be vulnerable, passive recipients of services that are reliant on state funding. We need to ensure that in the future, we regain choice and control over our lives. The time for talking is now over; we need to speak louder with our actions.

Yet again.